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So they think you've got ALCL
So they think you've got ALCL ALK negative and you want to know if this could be systemic, I think that the answer is yes, it could be. That doesn't seem as likely according to the source I'm using however. The question is whether this is a primary cutaneous lymphoma- which means it could be limited to the skin or extended no further than to some regional lymph nodes-- or a systemic ALCL with secondary cutaneous involvement. You might be able to find more information at the Cutaneous Lymphoma Foundation.
But keep this in mind-- there is no more difficult diagnosis to make for a pathologist than that of a T-cell lymphoma. They are frequently misdiagnosed. In the case of T-cell lymphomas, you absolutely need to have a qualified hematopathologist examine your slides. No two ways about it.
Ross
I went to urgent care for a
I went to urgent care for a persistent skin rash on my neck, and also showed m.d. the pimple like lesion on arms legs. she prescribed steroids ointment for the skin rash on my neck and did a skin biopsy on my arm. skin rash on neck went away and a week later she told me "skin biopsy came back abnormal" referred me to oncologist. the lab report read ALK- Anaplastic Large cell lymphoma of the t-cell. that's all i was told. im very scared.
OK well as you may have
OK well as you may have already learned, the preference here is for ALK- (negative) primary cutaneous anaplastic large t-cell lymphoma and not for the systemic variety, because the systemic subtype has a poor prognosis.
However the primary subtype has an extremely good prognosis, as noted in this paper from the Dutch Cutaneous Lymphoma Group, and at this website, both of which cite a cure rate of over 90%.
And there's good reason to think you have the primary cutaneous ALCL, and it's because of the ALK. Anaplastic Lymphoma Kinase is a protein expressed by some cells; when expressed, the citation is "ALK+" or "ALK positive". It is believed to be caused by a chromosomal translocation, and is "rarely found" in primary cutaneous ALCL; rather, "demonstration of ALK expression is highly suggestive of a systemic lymphoma with secondary skin involvement." (this paper is my primary source, and what I'm quoting from).
I'm not saying that this means 100% that you have the highly treatable and curable subtype, I'm just saying that the current understanding of the disease supports you having it, based only on what you've said thus far. If this is the case, treatment is pretty straightforward: it would likely involve some radiotherapy, and maybe some moderate chemotherapy, like methotrexate.
Ross
thanks for all the info.
thanks for all the info. physically i feel the same, just that a little itchy all over and at nite when im in bed it feels like i have sunburn on my back and my arms. thanks again. madeline